Tag Archives: #chronicfatigue

Fibromyalgia what you should know about me…

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WHAT YOU SHOULD KNOW ABOUT Me

Author’s note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even a day in their shoes…or their bodies. This is not my post. Im just reposting to share with everyone!

  • My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
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2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

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3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

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4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

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5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.

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6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

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7. My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

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8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

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9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

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10. My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

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11. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

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12. my uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

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What fibromyalgia pain may feel like. Real life examples…

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We all know that fibromyalgia is an invisible condition. I decided to explain what fibromyalgia would look like and feel like to people without fibromyalgia.

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I am including a sensitivity warning on this post as I have visually described what some fibromyalgia pain can feel like! If reading such imagery, I suggest you not read this post.

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1. Have you ever had a huge bruise somewhere on your body that hurts when you barely touch it?! The type of bruise that turns dark purple/ blue and stays for over a week?!! Image your entire body covered head to toe in bruises. Pretty painful thinking about it. I often tell people my body feels so bruised up. The below picture is a image that represents fibromyalgia pain well. This image often circulates on fibromyalgia groups with a description stating, “If fibromyalgia were visible!”

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2. Ever dropped a glass item and watched it shatter such as a drinking glass? I know I have and picking up the glass, results in possibilities of getting glass splinters in your fingers or accidentally stepping on a piece. Now image the spot where the shard entered getting infected and the area starts to throb. Try to image that feeling in every muscle you have – there are over 600 muscles in your body.

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3. Have you ever been on an acreage or farm that has barbed wire fences installed?!? The barbs on the fence are very sharp. I know I’ve cut my finger on these fences and snagged my clothing. Now image a piece of barbed wire wrapped around your legs and arms. The bards dig in and feel uncomfortable and possibly cut your skin. Now imagine someone pulling that piece of barbed wire tighter. What an unpleasant thought, yet alone feeling! Welcome to what fibromyalgia pain can be compared to.

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4. We have all received a static shock at some point in our lives unintentionally. Clothing creates shocks during the winter months. Imagine feeling like you are being shocked all day with no break. Everything you touch shocks you. Every step generates a shock. The feeling can become annoying or uncomfortable. Imagine putting on fuzzy socks and dragging your feet across the rug. It creates lots of shocks back to back. Now image these shocks in your brain or in every muscle in your body at once. Ouch!!

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5. Ahh! Sunshine!! Image you are Enjoying a beautiful day at the beach, not a worry in sight… until the next day when you realize you forgot to apply the sunscreen. Your skin is screaming back at you as you try to soothe the redness. Your sunburnt area is so sore even applying aloe makes you want to cry or the touch of your shirt lightly resting on your skin is unbearable. People with fibromyalgia can experience sensations like their skin has been burnt, with no relief. The touch of wearing clothing is enough to make us want to scream. People with fibromyalgia often get rashes on their body that can burn. I have experienced a few of these attacks.

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6. Image sitting around a relaxing campfire on a beautiful summer evening. You throw a piece of wood on the fire that begins to spit hot coals from the fire and sparks. Have you ever had a spark land on your skin and it hurts?! People with fibromyalgia can also experience these sensations without the visible sparks. It isn’t just one spark, its continuous spark pain for hours on end – even days..

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7. Imagine you just got off a long shift at work. You are exhausted and feel like you have been through the wringer! Now force yourself to stay awake. The fatigue a person with fibromyalgia feels everyday is equivalent to someone without fibromyalgia not sleeping at all for three days! Can you function if you were to stay awake for three days straight? Not even a 5 minute cat nap? I bet the answer is no.

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Fibromyalgia might be invisible, but there are many ways to visualize and represent what fibromyalgia pain can feel like. These are only six that I have written about. There are many more examples that come to mind.

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Is your chronic fatigue caused by fibromyalgia? Have you considered chronic fatigue syndrome?

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One of the most difficult and frustrating symptoms for myself is the chronic fatigue I have alongside fibromyalgia. When I got told by doctors and specialists that fibromyalgia is often accompanied by fatigue, I never thought the fatigue would be this life disrupting. I’ve learned that feeling tired versus feeling fatigued are two completely separate terms. When a person feels tired, sleeping will cure this tiredness, while fatigue is not relieved by any amount of sleep. In my case I have come to realize no matter how little or how much sleep I get, I feel extremely fatigued the next day, to the point it makes it extremely difficult to function and take care of my basic needs. Who knew eating could become tiring?!? Lifting food to my mouth and chewing the food has proven to be a chore at times. I literally told my doctor this exact sentence not long ago. Some days finding the energy to eat is just overwhelming. Can anyone else relate?

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At my last neurologist appointment, he explained to me that chronic fatigue is one of the most difficult things to treat as there are so many factors to think about to even pinpoint why the fatigue may be so disruptive. Fatigue is a symptom of fibromyalgia to begin with. A survey revealed, 780 males who have fibromyalgia, 93% reported chronic fatigue. While 4467 women were surveyed – 97% reported fatigue. The use of certain medications to help limit fibromyalgia pain could be part of the culprit to the added fatigue. Many medications used in treatment; have a possible side effect of fatigue.

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Ever hear about chronic fatigue syndrome (CFS)? I have done a lot of research between fibromyalgia and CFS. CFS is a completely separate condition from fibromyalgia. There again, it can be difficult to diagnose – just like fibromyalgia. There is no one test to diagnose CFS. I have never been officially diagnosed with it, but I stand firm when I state I do have it. Chronic fatigue syndrome also presents with many other symptoms. Below are some of the possible symptoms of chronic fatigue syndrome.

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Fatigue is not the only symptom people may experience with CFS. I often get daily sore throats, fevers that range from 99-103 F, and swollen lymph nodes. My blood tests always reflect no indication of any infection or that my body is battling a cold or flu. I’ve come to the conclusion that these symptoms I experience, are from chronic fatigue syndrome. There is no other explanation to why I exhibit these symptoms. These symptoms have a very quick onset and with little warning. As I write this blog, I found myself with a fever of 103. When these symptoms arise, it feels like I have the world’s worst flu bug…but I don’t. Have you ever had a flu that has knocked you down for days?!? Most of us have at some point. That is what I experience, but every day. Imagine living with a flu everyday – 24/7 for 365 days. Welcome to my reality.

As for treatment options for CFS, there have only been a few options mentioned to me, but not just a simple fix. My doctor and neurologist both mentioned the possibility of using a stimulant medication such as modafinil. By using a stimulant, one may see a response of wakefulness. Before using these medications there may be many aspects to think about prior. My doctor was very concerned that using a stimulant to improve my wakefulness during the day would be counter-active and not wear off before I went to bed causing further sleep issues to form. There are many listed side effects on these medications as well. Not everyone will experience the possible side effects. I personally find most medications can help relieve some symptoms, but then leave behind another symptom that may be unpleasant to deal with.

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The other treatment option that is supposed to help improve chronic fatigue syndrome is exercise. I was never given any further direction on what type of exercises help or duration; however, I’ve found adding exercise into my day very difficult. First of all, who wants to exercise when they are so fatigued and causes pain levels to hit pain levels of 10?!!One must find the right exercises and duration and not over do this exercise and make their fibromyalgia symptoms and fatigue worse. If you are seeing a kinesiologist, they may be able to guide you with this route. This was my running issue balance. In my particular case, trying to add exercise made me go into a fibro flare each and every time. Research states that pain levels will increase at the beginning until one’s pain threshold increases, but I found it difficult to follow through when the results were so negative and debilitating results. There may be other treatment routes to improve chronic fatigue. These two are the ones most talked about.

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When a person experiences chronic fatigue everyday it can impact a person’s cognitive abilities. I know I often struggle and search for words when I am trying to speak, leading to stuttering or creating words up that aren’t actually a word. I often joke saying maybe I could become rich by claiming rights to my newly created words. My concentration is also very limited, and I often find myself forgetting things. I will get into how fibromyalgia effects a person’s cognitive abilities in a later blog.

Just like fibromyalgia there is no cure for chronic fatigue syndrome. One must learn to maneuver through life the best he/she can while dealing with the exhaustion and symptoms left behind.

For more information visit: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510

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Fibromyalgia? Flu? Another illness? Autoimmune?

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One day you begin to feel aches and pains in different areas of your body. You assume you have a flu. You take the extra time to care for yourself to ease the body aches you feel – applying heat, ice, soak in a warm bath, take some cold/flu pills to help…Whatever you personally find helps you ease aches and pains from a flu. Nothing eases the dull pain and aches you feel. You make the trip to the doctor’s office in hopes of a professional’s opinion and relief. Your doctor does a physical exam and finds nothing physically wrong and orders bloodwork to investigate further. You return home and continue to try to ease the symptoms of this horrible flu bug you think you have caught. Results come back from your bloodwork and reveals nothing is wrong. No abnormalities detected to indicate your body is malfunctioning in any way. Your doctor decides to run blood work a second time. In the meantime, your body is so tired and fatigued from the consistent aching and pain that you begin to become mentally and physically exhausted. As the days go by the pain continues to become more intense and you notice more areas of your body begin to ache and different intensities of pain levels begin to form. The fatigue and pain become unbearable. You go back to the doctor to get the results. NORMAL? ‘How can everything be coming back normal when I hurt so bad? “Why do I hurt the way I do?” “What is causing my pain? ” Your doctor responds with, “I suspect you have fibromyalgia.” You take a moment for this to sink in and absorb the presented information. Does this story sound familiar? I often hear the same story from many other fibromyalgia sufferers. Some of us have heard of fibromyalgia while some of us have never heard of this diagnosis. Whether you have heard of fibromyalgia or not, most likely you went home to begin your own personal research on fibromyalgia. This is where my journey began. What about you? There is much more to fibromyalgia then just the aches and pains.

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The diagnosis process can be very long and a drawn-out process and become frustrating. Doctors often diagnose fibromyalgia from symptoms (which I won’t list here as there are a lot) and possibly will conduct a physical exam as in fibromyalgia, there are 18 trigger point/tender point areas on a person’s body. Some or all of these areas will be tender to the touch. Scroll to the end of this article to see a picture of these tender point areas. For myself I have all 18 areas that are tender to the touch – however my upper back, legs and arms are the most sensitive areas, but the areas can change daily. As most of us know there is not a specific test that can detect fibromyalgia (at least in Canada). I have read articles posted in other areas of the world stating there is now a test that can be conducted to determine if you have Fibromyalgia. I am not sure if this is accurate information, but in a perfect world, wouldn’t it be wonderful to just get a test done to confirm the assumption?!?! I found not having a solid yes on diagnosis hard to accept. I was in denial for the longest time and second guessing my health. Fibromyalgia is diagnosed by eliminating possibilities of other illnesses and conditions prior, which can take time. My doctor diagnosed me fairly quickly – almost so quickly that I wondered if I was really fibromyalgia or misdiagnosed. However, over the years I have seen specialists such as a rheumatologist and neurologist who firmly have agreed with my primary doctor’s diagnosis of fibromyalgia. There are many other conditions that have some overlapping symptoms of fibromyalgia and can be mimic fibromyalgia such as rheumatoid arthritis, Lyme disease, multiple sclerosis (MS) lupus and polymyalgia rheumatica. I’m sure there are other conditions that could possibly mimic fibromyalgia. The above listed are conditions that I read about in my own research. All my blood work kept coming back with no detected abnormalities – no indication of autoimmune disorders. I even requested an MRI be completed to check for brain lesions that may detect MS. To my surprise, a lesion was detected on my brainstem, which is usually an indication of MS. My neurologist quickly ordered a second MRI, to rescan and also had my cervical neck scanned for further lesions. In the end my results never revealed any further lesions and my neurologist stuck with the fibromyalgia diagnosis but never full ruled out MS. My primary doctor was very through in his tests prior to me seeing specialist. My neurologist was impressed at how through he was and ran all necessary tests needed and reran those tests more than once to make sure the results were conclusive.

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My advice to you, if you are still in the diagnosis stage and suspect you may have fibromyalgia and want your doctor to investigate further……

  1. Be sure to see doctors, specialists, and any other health care providers that believe in fibromyalgia. There are many health care providers out there that still think fibromyalgia is in one’s head or are not up to current information on fibromyalgia. Never let anyone convince you that fibromyalgia is just a mental state, and you are imagining it. The pain we feel is real and so are the symptoms experienced. I questioned this myself early on and wondered if I was mentally ill – thinking I was in pain, and it was not really there. The best thing my doctor did was tell me the pain I feel is real and that I was not just going crazy!
  2. Don’t be afraid to ask questions. Ask as many as need!
  3. Do your own research. Arm yourself with knowledge. Doctors often discourage you from researching on your own. My doctor encouraged it. It helped me understand fibromyalgia on a different level. Doctors often explain in medical terms which can be confusing and face it “over our heads”. Reaching it yourself and reading it in simpler terms is easier to understand and comprehend without a medical background.
  4. Try to connect with other people diagnosed with fibromyalgia. There are so many wonderful groups on Facebook these days help us stay connected. Connecting with others who are experiencing the exact same as you or similar, even if they are at a distance makes one feel not so alone during this journey.

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